Disability History

November 03, 2011

Just as I’m flying to California State University Northridge to present at their Deaf College Student Leadership Conference, I was reading a copy of Newsweek. There was a story on the infectious appeal of the #Occupy Wall Street movement. One particular quote stood out to me:

“In 2008 vast new numbers of Americans transformed the political process through social media and small-donor fundraising, electing a rank outsider, Obama, who challenged the natural heirs to the old system, the Clintons. The next year Iranians, empowered by the same technologies, called their own leaders’ electoral bluff and nearly changed the world. This year the very same empowerment gave us the Arab Spring.” - Andrew Sullivan, October 31 2011

The narrative goes on to link the meteoric trajectory of social media’s increasing presence in our daily lives and its impact upon global politics and - yes - corporate responsibilities. The “99%,” as they unveiled themselves on Wall Street more than six weeks ago, spoke out against growing income inequality and argued that financial institutions played a large role in it. The #Occupy Wall Street movement quickly expanded exponentially, garnering solid support through public opinion, even seeing #Occupy camps being set up in other cities. Soon, the #Occupy movement had hit the international level. I was starting to become accustomed to seeing the pictures of frustrated people getting their message out. I was inspired when these same pictures from places such as India, Italy, Chile, Russia, the United Kingdom, Algeria, and Spain appeared.

Some people criticized #Occupy as disorganized and lacking focus. But other pundits took to the pages of newspapers, magazines, and blogs to defend the #Occupy movement, calling it “not a protest but a true movement.” Regardless of how one defines #Occupy it’s clear to me that it could not have been possible without the power of social media.

We now see where the narrative has led us to, but the untold story is how the narrative didn’t begin at Obama’s 2008 campaign. The revolution of the social media hit the people with disabilities community, with their unique needs and perspectives, and changed their lives before the 2008 campaign. I’m telling this story not to have the disability community take credit as the originators but to give evidence of and solidify our unique status as “the canaries in the mine.”

What, canaries? How does that relate to #Occupy Wall Street and the world of Facebook/ Twitter/ YouTube?

In the olden days, when there was no technology to detect dangerous and deadly carbon monoxide in the mine, people used to bring canaries - bright, yellow, and singing - into the dark pits of the mines. Their purpose was to keep the miners alive. Because the canary was such a small, fragile bird, the carbon monoxide severely damaged the canary’s lungs long before it could have detectable effect on the miners. As soon as the canary stopped singing and dropped dead, the miners knew it was time to get out of the mine. Through this strategy, hundreds of human lives were saved.

The disability community - especially the deaf community, where I hail from - is likewise smaller, more fragile, and the “first to be impacted” by nearly anything that happens in the real world.

At generally the same time as the hearing world, the deaf community discovered blogging and vlogging (video-blogging). In May 2006, as the members of Gallaudet University rose up in a protest against the Board of Trustees’ decision to select a controversial candidate as the next President, the impact revebrated through the circles of deaf social media with a sonic boom. The administration presented their side of the story, which the protesters disputed and learned through the hard way that the mainstream media wasn’t always so fair in their coverage. The frustration of having one same article published in hundreds of newspapers through the Associated Press intensified the protesters’ dissent and added more to their argument that the perception and explantation of the protest was distorted and dishonest by the administration. We were merely students, staff, faculty, and alumni up against media professionals!! Such was the frustration we faced, but I’ll never forget this one game-changing line from the University’s offical public-relations spokesperson, defending the administration’s public relations tactic of distortion and giving misleading explanation of the protest’s real issues:

“Actually, the protesters have been very effective in getting their messages out through blogs and vlogs.”

That was true. Very true. Game-changing true. Ever since before the protest had happened, the deaf community was watching the protest closely and with deep interest through the internet. There was a blog set up that tracked the candidates for the Gallaudet University Presidential Search. Vlogs were made, hot discussions were had, and comments numbered well into the thousands. The anticipation was ripe when the announcement was made in May 2006 and when the information was disseminated, the blogosphere exploded in discussion and activism. There were a few blogs that ultimately became a kind of news channel for the deaf community, rapidly updating nearly daily with new information and developments. This gave us opportunity to present our side and our story, absolutely unfiltered and unmanipulated by the mainstream media.

At the time, we had only one media strategy - tell the truth. Tell the truth. Try to get the mainstream media to explain the truth. We didn’t have any other strategy than that but looking back, we utilized many tools that were enormously effective through the use of social media. We were able to galvanize and organize the community in a mass, to control and continue pushing our message out, and stick a powerful thumb in the side of the big guys.

The underdogs won in October 2006, when the Gallaudet Board of Trustees announced that the president-designate’s appointment would be rescinded. We cheered our victory! And in the aftermath, we were proud that our internet outreach had been so powerful to expand the tent city on Gallaudet University’s front lawn to a series of tent cities across the nation and internationally.

In 2007, when Dr. Robert Davila became the first person of color to serve as Gallaudet University’s president, the moment had great signifiance to many communities. As he took the podium to give his acceptance speech to the community, the first thing he said was “I’m home.” The deaf community cheered once again! That same year, then-Senator Barack Obama surveyed the landscape and decided that the moment was ripe for him to run for the President of the United States.

What the deaf community went through in these turburlent times of 2006-2007 ultimately gave us a small prediction of what would happen in the larger American and even international society. First, the impact of social media and the use of internet campaigns completely changed the way we organized ourselves for social and political causes. Secondly, people of color are now becoming more and more in our society. We are no longer survivors of outdated perceptions, inspiring in their climb towards the top. They are now university presidents, Commander in Chief, even overthrowing regimes.

Wherever you live, whatever your goals, whichever candidate you support, you are living in a world where social media – as mastered by the Deaf community—is a source of power that can’t be ignored. We tested the atmosphere and carved out a space for great work. What we have done will have a profound impact on movements that follow.

October 27, 2011

Tonight PBS will air the documentary “Lives Worth Living” about disability rights champion Fred Fay. This is TV worth watching. In an era when so much TV programming features people who are famous for being famous, we have a rare chance to learn about someone who moved mountains.

Who was Fred Fay? He was an architect of the disability rights movement. He was a founder of the Justice for All web network. He was an organizer, an innovator, and an inventor. Working from a motorized bed he designed with three computer screens in reach, Fred Fay connected people to ideas and to each other. Over the course of decades, he knocked down barriers for people with disabilities and helped change our landscape to be more accessible.

Watch “Lives Worth Living” with your friends, family, congregation, classmates, or neighbors. Launch a conversation-- what makes our lives worth living, and what would it take to fulfill our enormous potential as Fred did? What can we invent? Whom can we touch with our own gifts?

June 17, 2011

June 22 is a historic day for the disability community. Not only does it mark the anniversary of the 1999 Supreme Court Olmstead decision which affirmed the right of people with disabilities to live in their homes and communities, but it also marks the anniversary of the death of Justin Dart, Jr. who is widely recognized as "the father of the Americans with Disabilities Act," "the godfather of the disability rights movement," and co-founder of Justice for All.

In a time when the rights of many people with disabilities are in peril, it is important to remember the strength of our collective roots, acknowledge our current allies and rededicate ourselves to the work ahead.

C-SPAN has recently posted the video of his memorial service in their video library. I encourage advocates, young and old, to spend time watching, listening and learning about Justin's life and vision of a "revolution of empowerment." Justin taught us: "Get involved in politics and advocacy as if your lives depended on it. They do, and the lives of our grandchildren. You can be a soldier of justice. You can be a revolution of one. The dedicated, total effort of a single individual to struggle for the human dream is a monumental, irreversible victory for the person and for humanity. That is real happiness. That is the good life."

As we face major reductions in services at the national, state and local levels, as Congress considers deep cuts to Medicaid, Medicare, food stamp programs, TANF and Social Security, these words are as applicable today as they ever were.

A survey conducted by the Council for Exceptional Children (CEC) – the largest international organization of professionals who work on behalf of children and youth with disabilities and gifts and talents – in collaboration with the Council of Administrators of Special Education (CASE), a division of CEC, reveals the poor economy is negatively impacting special education.

92% of respondents state there is – or is anticipated in the near future – an increased strain on the availability of services for students with disabilities, meaning that the poor economy is making it increasingly difficult to provide services and supports to students with disabilities...

These survey results demonstrate that school districts across the nation are struggling to meet the needs of students with disabilities while confronting very difficult economic times…

CEC has been effectively advocating for maintaining and increasing funding for special education:

…In February, CEC and its members fended off efforts by the House of Representatives to cut IDEA Part B by over $500 million. Unfortunately, this funding was restored to IDEA by taking funding from two other important education programs: school improvement and professional development grants. CEC opposes any effort to take from one education program to fund another…

...Randy Lewis, senior vice president of distribution and logistics for Walgreens, was the driving force behind Walgreens' extraordinary program to employ people with disabilities at its DC in Anderson, S.C. We first wrote about that effort in October 2007. In that story, we noted that Walgreens had committed to the plan even before selecting a site for the facility. And it was never seen as a short-term initiative or social experiment. Walgreens' decision to locate in Anderson was largely driven by the area's sizeable labor pool of disabled workers and the support services needed to help them succeed. "We wanted a sustainable model," Lewis said at the time.

And sustainable it has been. Today, workers with disabilities make up 40 percent of the work force at the Anderson DC, performing the same work as their more typically abled co-workers for the same pay. Walgreens has expanded the program to other facilities, most recently to its newest DC in Connecticut. And the Walgreens example has inspired other companies, including Lowes, Best Buy, Meijer, and Sears, to make similar efforts...

...On a February afternoon in 2007, Jonathan, a skinny, autistic 13-year-old, was asphyxiated, slowly crushed to death in the back seat of a van by a state employee who had worked nearly 200 hours without a day off over 15 days. The employee, a ninth-grade dropout with a criminal conviction for selling marijuana, had been on duty during at least one previous episode of alleged abuse involving Jonathan...

In the front seat of the van, the driver, another state worker at Oswald D. Heck Developmental Center, watched through the rear-view mirror but said little. He had been fired from four different private providers of services to the developmentally disabled before the state hired him to care for the same vulnerable population.

O. D. Heck is one of nine large institutions in New York that house the developmentally disabled, those with cerebral palsy, autism, Down syndrome and other conditions.

These institutions spend two and a half times as much money, per resident, as the thousands of smaller group homes that care for far more of the 135,000 developmentally disabled New Yorkers receiving services.

But the institutions are hardly a model: Those who run them have tolerated physical and psychological abuse, knowingly hired unqualified workers, ignored complaints by whistle-blowers and failed to credibly investigate cases of abuse and neglect, according to a review by The New York Times of thousands of state records and court documents, along with interviews of current and former employees...

How can recorded accounts of these institutions' mistreatment of residents and irresponsible management of funding be used to advocate for quality living situations for people with developmental disabilities? Please share your thoughts in comments below.

Vermont offers the best Medicaid services for individuals with intellectual and developmental disabilities while Mississippi provides the worst, according to an annual ranking released Thursday.

The 50-state analysis from United Cerebral Palsy compares services offered across the country, giving preference to states where more individuals are served in the community as opposed to institutions.

Vermont, Arizona, Michigan, New Hampshire and California fare best in the ranking. Meanwhile, the District of Columbia, Illinois, Texas, Arkansas and Mississippi round out the bottom of the list. (Find out where your state stands >>)...

June 03, 2011

U.S. Departments of Transportation, Education and Labor Report Progress in Disability Rights Advocacy

By Jenifer Simpson, Government Affairs, AAPD

On Thursday May 27, 2011 AAPD participated again in the monthly disability outreach call that is hosted by Kareem Dale, Special Assistant to the President for Disability Policy. This briefing focused on recent efforts and some updates by the U.S. Departments of Transportation (DOT), Education (DOE) and Labor (DOL) on steps they are taking to implement and enforce non-discrimination of people with disabilities.

Transportation

The U.S. Secretary of Transportation, Ray LaHood, provided an update of his department’s various efforts to ensure accessible transportation, stating that accessibility is “One of our highest priorities at DOT,” and noted the importance of accessible transportation to employment, shopping and other activities. He also stated that “All people have physical limitations and all can expect disabilities as they get older.”

Travel: He said DOT will be celebrating the 25th Anniversary of the Air Carriers Access Act (ACAA) in the fall with an event. He mentioned the ADA regulations issued in 2010 that ensure that boats and ships don't discriminate, that is, vessel operators cannot charge extra for accessibility related services, cannot require someone to have an attendant and must have knowledgeable people available with information about accessibility and to resolve concerns of people with disabilities. He also said DOT was working with the U.S. Access Board on several rulemakings for construction guidelines for passenger vessels and on accessible public rights of way, such as streets, sidewalks and intersections. He said that they were also working to finalize regulations on new and altered rail stations so people with disabilities can have access.

Airplanes and Airports: LaHood said DOT would issue Notices of Proposed Rulemaking (NPRMs) soon. One will focus on airport and airline accessibility such as check-in areas, kiosks, airline websites, accessibility of in-flight entertainment, toilets on single-aisle planes, and service animals for psychiatric support. Another NPRM will focus on airport services such as service animal relief areas, captioning of waiting area TVs, and lifts used for getting on planes.

Enforcement: LaHood reported on DOT efforts to conduct better ACAA enforcement noting settlements with air carriers last year and civil penalties ranging from$125,000 to over $2 million, the largest ever assessed by DOT for a non safety-related violation.

Education

Russlynn Ali, the Assistant Secretary for Civil Rights at the U.S. Department of Education (DOE) then spoke about the Office of Civil Rights division (OCR) at DOE and made an announcement about accessible technology in education.

Enforcement: She said that OCR has twelve regional offices around the nation that enforce Section 504 of the Rehabilitation Act and Title II of the ADA. She said these offices field complaints from everyone and urged call listeners to contact these regional offices. She said that “Secretary Duncan wants to work proactively with schools, colleges and universities to ensure non-discrimination” and “to help with compliance on front end.” She said they have conducted nineteen compliance reviews over past the past two years, leading to improving education opportunities for many students with disabilities.

Accessible Technology: In follow-up guidance that DOE sent in June 2010 to college and university presidents on accessible E-book readers and other technology, Assistant Secretary Ali has now sent a new guidance letter on technology for students with disabilities. This “Dear Colleague” letter was sent to elementary and secondary schools, institutions of higher education, school boards, school superintendents and others on May 26, 2011. Ali said the new guidance “makes it clear that any emerging technologies, especially E-book readers, needed to be fully accessible” or other accommodations to disability “made in a timely way.” She said that the guidance includes an FAQ and other material and suggestions for teachers and others be as proactive and responsive as possible. Letters and Guidance are below.

Labor Department

Patricia Shiu, the Director of the Office of Federal Contract Compliance Programs (OFCCP) at the U.S. Department of Labor then spoke. She said OFCCP “is totally committed to full employment of people with disabilities, to have access to good jobs and to retain those jobs.” She noted that her office is one thirty of federal agencies that enforces civil rights and is “on the front lines for those who seek work and who are at work.” She said that “OFCCP was born in civil rights era.” She said that “those who contract and subcontract with the federal government must not discriminate in employment,” adding that “taxpayer dollars should never be used to discriminate.”

She said that one in four Americans works for a company with a federal contract, which is about 200,000 companies who receive over $700 million dollars annually. She said “enforcement actions should have positive ripple effect,” and her office has “a legal and moral responsibility to the public trust we hold.” She added that “being a federal contractor is a privilege, not a right, and they must abide by the law.”

New Regulations: Shiu said they were in the process of reforming the current OFCCP regulations. Last July 2010 they began the process with an Advance Notice of Proposed Rulemaking (ANPRM) on Section 503 non-discrimination requirements in the Rehabilitation Act of 1973. With receipt of comments from the ANPRM they have drafted a Proposed Rule on affirmative action and non-discrimination obligations of federal contractors and their subcontractors, sent to OMB on May 24, 2011, and which is under interagency review before it will be released for further public comments.

Ms. Shiu spoke about herself briefly, saying she had been a civil rights attorney for over 26 years, representing immigrants, people for whom English is a second language, garment workers, African American factory workers and people with disabilities. She said that “work is not about a paycheck but also about respect and self worth and financial security.” She added that “Workers want to be valued and want to work.” She also reiterated the Administration’s commitment to hire 100,000 people with disabilities over the next five years and that DOL is working on that.

Other Updates

Housing Lawsuit: Following these federal department updates, Kareem Dale provided some updates such as on the recent filing of a suit by US DOJ against the owners, developers, designers and construction company for nine multi-family housing buildings in Louisiana, Mississippi and Tennessee. These complexes comprise over 2,000 apartments and the investigation is looking at accessibility of the apartments and access to the leasing offices among other issues.

Accessible Money: Kareem Dale then mentioned the recent release by the U.S. Bureau of Engraving of a free downloadable app called “Eye Note.” This can be used by blind people on I-phones to read the denomination of money. Dale noted how “Technology when accessible, gives access” and send he uses the app himself.

Presidential Citizen’s Medal: Dale said that the White House was still receiving nominations for the 2011 Presidential Citizens Medal, and that the close date was May 31 and encouraged listeners of the call to visit the website, see who has been nominated or to submit a nomination.

June 02, 2011

Contact your Representatives and Senators to advocate against more proposals to slash funding for Medicaid.

It is critically important that Congress be made aware of our strong opposition to large cuts in the federal funding for Medicaid. These cuts are under serious consideration in on-going discussions in a current legislative package. The discussion involves linking an increase in the total amount of debt the federal government can incur with cuts in annual federal spending. The deadline for this legislative package is now set at August 3. This is the date on which the federal government believes it will be unable to pay existing debt if the debt ceiling is not increased. Our voices must be heard before then!

Background: There is a consensus that a failure to increase the debt ceiling by August 3 would have catastrophic consequences for the United States and global economies. At the same time, it is believed that it will not be possible to pass legislation to raise the debt ceiling without accompanying legislation to reduce the annual federal budget deficit.

In discussions about reducing federal spending, Medicaid is a natural target. In fiscal 2011, Medicaid cost $275 billion, about 7.6% of all federal spending. The cost will increase significantly over the next decade due to an aging population and increases in medical costs. The pressure to cut Medicaid will intensify because it will be difficult to make substantial cuts in the other large entitlement programs, Social Security and Medicare, because they have larger constituencies than Medicaid.

Proposals: There are a number of pending concepts for reducing Medicaid, and it may not be clear until close to August 3 which proposals will be seriously considered. In these circumstances the best approach for supporters of Medicaid is to make every Member of Congress (and the Administration) aware of our strong opposition to any proposals which would make major cuts. Our opposition needs to be expressed early and often.

Ryan Plan: The most prominent proposal is the Ryan plan that passed the House in May. The Ryan plan would reduce Medicaid funding by about $772 billion (about 35%) over the next decade compared to a status quo program. It would be left to the states to limit their programs to deal with reduced federal support. They are likely to curtail the services they cover and limit eligibility. The Ryan plan is unlikely to be accepted by the Senate.

Other proposals: These are generally less specific than Ryan’s plan. Most would also lead to major cuts and consequential changes at the state level. These include proposals to limit all federal spending to a percentage of Gross Domestic Product (GDP), or to impose this type of limit on all health care programs, or all entitlement programs. It would be difficult to meet these limits without major cuts in Medicaid.

Suggested Disability Talking Points:

Medicaid is critical for the health care of 8 million people with disabilities.

Medicaid pays for wheelchairs and prosthetic devices for people with disabilities such as spinal chord injury, cerebral palsy and other disabilities.

Medicaid pays for prescription drugs for persons with mental illnesses and epilepsy and other medical conditions.

Medicaid pays for programs to enable people with intellectual disabilities to live and work in the community.

Medicaid’s Early and Periodic Screening Diagnosis & Treatment program helps identify children’s disabilities early and gets them the care they need.

Pending proposals for “block grants” and “global spending caps” would undermine these important programs by reducing funding for Medicaid. They would deny health and long term care to millions of vulnerable Americans.

The Ryan block grant plan would reduce funding over the next 10 years by $772 billion (35%) compared to continuation of the status quo. Global spending cap proposals would also lead to substantial reductions in Medicaid funding.

Reduced federal funding would compel the states -- that have serious financial problems of their own -- to sharply restrict enrollment, eligibility and benefits for the populations they now serve. These changes could impact many of the current waivers that support community-based living for people with disabilities. The changes could have a disproportionate impact on people with disabilities who rely on Medicaid to enhance their ability to live and work in their communities and to avoid costly and unnecessary institutionalizations.

Ten Advocacy Steps

Write or e-mail your Representatives and Senators today.

Call your two U.S. Senators and U.S. House Representative in their local state offices to set up a time to meet when they are home next. Under the current schedule:

U.S. House Members are expected to be in their districts June 4-12, June 25-July 5, and July 16-24. Make an appointment today!

This list includes their Senate address and phone numbers. If you can only get a meeting with a staff person, do that too.

If you or someone you know with a disability benefits from Medicaid directly, be sure to mention that at the meeting.

Be sure to write a letter (send snail mail) using the Talking Points above; organize a “Save Medicaid for Us” Letter Writing event.

Go to Members’ websites and write them Emails or fill out the online form and let your opinion be heard. Organize an “Email to Save Medicaid” party.

If Members hold Town Meetings, show up, sit at the front and make the points above. If you have facts and figures about your state Medicaid program, be sure to mention that at the meeting. Tell ‘em what the cuts would really mean to you! Remember, personal stories stick in Members’ minds.

Be sure to state that you are a “registered voter” in any letter or at any Town Meeting.

If you see letters to the editor or op eds or TV news items decrying wasteful Medicaid spending, be sure to respond quickly using the Talking Points above.

Let AAPD know what you hear or learn in your meetings, via email to Policy@aapd.comWe can take your information – without your name -- with us when we meet any Congressional Members or Administration officials.

May 31, 2011

How the Army Denied Tens of Thousands of Soldiers PTSD Care and Benefits

For eighteen years the Army used the wrong standard to determine the degree of disability and the amount of benefits due to Soldiers with mental health conditions, including Post-Traumatic Stress Disorder. The standard the Army used, at first, was at least recognizable as related to the correct standard. However, the correct standard was updated in 1996 and for 12 years afterwords the Army used a completely erroneous standard to deny benefits to those who need it most- disabled Warriors with injuries so severe they could not continue to serve. The result was denial of health care and compensation to the most vulnerable. Though there have been clear strides to address the problems, as late as this month the US government has defended its use of the wrong standard in court. And nothing has been done to address the tens of thousands of Soldiers who were improperly rated. In a time with record high suicides by Soldiers, this cannot stand...

Frankie Mastrangelo is the moderator for both the Justice For All (JFA) national email listerv as well as for the JFActivist blog. She is also an organizer for the American Association of People with Disabilities in Washington, D.C.